New to lupus please anyone answer me this question.Does lupus come in phases ??

New to lupus please anyone answer me this question.Does lupus come in phases ??

Ok myLupus started with my hands ,then feet.It spead to my knees .THe pain in my small joints toes fingers hand wrist crippling pain.Now my have Gi problems bleeding ulcer.I'm throwing up blood its literally coming from both end black TMI stool and red bright red blood vomitting..M,y other systems feel ok today for the first time .But that might be cause I'm on norco and its a narcotic.If it is just from this medication then I want to see about getting this medication for flare up.Because I can type I can walk in the evening.It feels odd to not have the terrible pain everyhwere.Its sad my god .I'm saying throwing up blood and having severe stomach pain is better than the other pain.I forgot what it feels like to just be me.I really need to know tho if thats what lupus does comes and goes in phases?

33 Replies

  • It does tend to go from one thing to another. Hopefully, you will be get on medication that will quiet it down. If you are taking NSAIDs or aspirin that can cause gastric bleeding. Narco can cause vomiting. At any rate you should get emergency treatment for a lot of bleeding. It can be serious.

    Hope you get things under control soon.

  • I agree. The bleeding isn't a symptom a systemic lupus and sounds like it is a side effect from one of the painkillers.

    As for phases, I think systemic lupus is variable. However, SLE pain does get worse in the evening and night when cortisol is lower (circadian rhythm).

  • my rheumatologist told me some people do have severe GI problems during a flare up.I called to see if he would let me come in but he had no openings just said what I know.Go to er.

  • If you have a choice, go to an ER that has rheumatologists available. In my area that would be the one next to a teaching hospital which has a rheum clinic.

  • No NSAIDS I know not to take them and these ulcers started 2 weeks ago just progressed. I can't leave my Baby nobody else that I live with cares for her...i'm the only one even if I'm severely sick and people are here they will just ignore her crying.So being here and seeing that when I couldn't get out of bed makes me certain that I can't be admitted tho i really know I should.

  • I do so hope by now you have been seen and the cause of the the bleeding determined and treated, Juliet. It is not normal and as everyone has said. Many of us 'nurture' a gastric ulcer which will bleed occasionally especially if on a blood thinner, however, fresh blood is NOT ok.

    Keep posting we want to know you're ok. I feel sad that your house mates are not understanding your condition and circumstances.

    X and gentle hug


  • You need to go straight to the doctor ASAP if you are bleeding internally ie vomiting or passing blood with dark stools. This is not something to delay on.

  • Any bleeding from the gut such as you describe should be attended to immediately. It is abnormal dangerous and should not be underestimated. Please go to a relevant emergency department near you for immediate assessment. I am an ICU RN please go today.

  • I would if I could I also live with a nurse .She works night shift tho and comes home around 9:30 She helps me with the baby and takes my blood sugar blood pressure and heart rate.I been drinking protein shakes and keeping them down.But still have horrible pain when I first wake up until I take my medications.

  • I can only repeat what others have said. Blood like this is a danger signal, and an emergency. It could be med related. I have GI problems anyway and have to avoid anything that can lead to these problems.

  • I dont know if plaquenil causes this its my only new medicine.Norco is not an NSAID or tramadol.These were supposed to be safe pain medications for me with a history of bleeding ulcers.

  • Hi Julietsmombless2015,

    I'm going to echo what everybody else is saying here and recommend that you get checked out for this gastric bleeding urgently. Please keep us updated with how you get on.

    Lupus is a very complicated and unpredictable condition so it is very difficult to guess where it might 'strike' next. People with lupus often find that certain symptoms may come and go (often linked to disease activity) and new symptoms often crop up.

  • I called my DR told him what was going on and he said "make an appointment with a GI doctor.. Gave me the number and I get seen tomorrow.I dont take Nsaids. I can't because I get these GI problems with every flare up.Ulcers all throughout my digestive tract.I know you're supposed to go to the ER when this happens.But I have a 10 month old baby.And nobody to care for her accept for myself and I know they will admit me she needs me home with her.Normally I would have my Mother watch her but she just had major surgery and cannot lift the baby herself.I really have no choice but to wait it out for the Dr to do a endo and maybe a colonoscopy again.this will be my 6th one.They do this everytime and its always ulcers everywhere starting from the top of my stomach and throughout my intestines .They show me pictures of the ulcers then send me home to heal.I have the carafate pills and know what to do.This has happened to me many times in my life .Especially the past 5 years.I live with a nurse she checks my blood pressure and also my blood sugar to make sure my pressure isn't low and that I have normal levels of sugar.I control the pain using my kidney stones medication norco and tramadol and I switch them every 6 to 8 hours, which are strong but I cannot take care of my baby without them until this settles down.The doctor said "if you start to feel extremely dizzy or start throwing up uncontrollably then go in.He tried to get me to go but I cant and the people I live with said they could help with the baby.But this morning when I couldn't get out of bed from puking overnight I was exhausted and in extreme pain nobody got up.She cried for 1 hr until I could control the pain with tramadol and get her fed and changed.If I go in she wont be taken care of and I have to put her first.That just proved to me I did the right thing for my situation.I felt bad enough she had to wait an hr for me .But nobody else responded and they were even up in the house so I cant have that.

  • Hi Julietsmombless2015,

    Do you have any friends, other than those that you live with, who could look after your daughter for you while you visit the doctor? Perhaps friends who have young children themselves?

    Please do try to get to the doctor as soon as you can.


  • That's really a bad situation to have a baby and no one to look after her if you are too sick. But if you have a really serious situation like bleeding yourself and don't attend to it, you will end up in the hospital, or even worse. So taking care of yourself is really important for your baby.

    So people are living in your house and they won't help you when you are sick? Can you have what we call in the US a "come to Jesus" talk with them, so you can have help with the baby and yourself when you need it? I know it is hard for me to ask for help, but you need to find support somewhere.

  • I went to GI appointment.I signed paperwork to stay home opt of admitting.And get this ulcer burned shut tomorrow morning 9 am.I cannot wait to get it taken care of I hate lupus! I hate all of this! I can't take another thing happening.I I tried to listen to the GI doctor to go home with it but having a 10 month old baby its hard to not lift her.She does crawl and I have been making her come to me and pick her up less.I make her bottles and food and have her crawl to me.I dont eat food to stretch out the ulcer.I have been taking tramadol for the pain Its is a relief,it stopped bleeding as bad anyways..I can't see in there to know .But I have been staying in fetal position most of the time staying in drinking fluids.I'm still alive sometimes ahhh I can't stand the pain but I have to be strong for my baby girl.

  • slippery elm bark will protect your stomach lining (1 teaspoon of slippery elm in 8 ounces pure water 3x a day, boil water add in slippery elm then let it cool down to body temperature drink at body temperature) giving it a coating to enable it to heal

    and cayenne pepper will heal your GI tract and replenish your digestive juices as well as boosting your heart it will also cauterize the ulcer an eighth of a teaspoon three times a day of the cayenne then increase up to a full teaspoon three times a day.

    although if you are bleeding take some V8 tomato juice and add in 1 teaspoon of cayenne pepper and sip it make sure you only have a real small amount first as it is hot the bleeding will stop within 2 days.

    if you are drinking tap water you are never going to heal there are too many contaminants in it and fluoride inhibits production of pancreatic juices, if you can afford it buy distilled water and don't eat any grains. if the protein shake has soy protein isolate in it throw it in the bin soy is one of the worst foods on the market.

    If you have got no-one then phone the church up and ask them to come and help you

    you would also benefit by drinking only vegetable broth but only heat to body temperature.

  • Hi Julietsmombless2015,

    Please discuss any alternative or complementary treatments or significant changes to diet with your consultant first. What works for one person may not for another and could potentially be harmful.

  • so the medical advice she has so far received has led to her throwing up blood and risking her life, whereas I tell her about a completely safe food source that has proven to cauterize ulcers and heal the GI tract as well as pointing out a valid possibility on why she is ill and which can only benefit from

    Paul I'm sure you mean well but the truth of the matter is the medical establishment has no interest in helping people to get better as you can see they have no cure for lupus yet cutting out poisonous foods and water and replacing them with natural foods that our livers are designed for is nothing other than common sense. now if you would like me to prove the things I talk about I am more than happy to show you all. rather than you protecting a corrupt system would it not be better to work out how to help people?

  • It is inappropriate to suggest that slippery elm bark is 'completely safe'. Slippery elm contains a type of soft fiber called mucilage. Mucilage can decrease how much medicine the body absorbs. Taking slippery elm at the same time you take medications by mouth can decrease the effectiveness of your medication. By decreasing the effectiveness of medication it could cause somebody's lupus to become more active.

    It is not fair of you to say that the 'medical establishment has no interest in helping people to get better'. There is no cure for lupus yet because it is an incredibly complicated condition that still isn't fully understood. Lots of research is being done and improvements in treatment are being made.

    We are here to help people by providing up-to-date, accurate, reliable, unbiased and evidence-based information.

    You are not qualified to advise people on this forum about decisions relating to their health, without them first consulting their doctors or healthcare professionals.

  • Paul In a nutshell the pharmaceutical industry is used to kill people

    Fluoride and its precursor chemical fertiliser which is derived from the tailings that cannot have the uranium extracted out of it from the nuclear industry is the cause of autoimmune disease when you grow things with nuclear waste and put it into the water supply you are going to get consequences like we have today.

    doctors who do not learn about the use of food are nothing more than psychopaths that have been taught a load of rubbish by the very same people that produce the nuclear waste.

    I don't know if you are a willing participant in this or you genuinely don't know that this is going on but you do now so I suggest you educate yourself in these matters like I have done and then you can genuinely help people

    and by the way removing all toxins from the diet and using food grade hydrogen peroxide diluted in pure water will cure a large percentage of people with lupus and I bet your charity will not test this.

  • I appreciate that you wish to share your beliefs, but this is not the place for it. I'm sorry if you have had negative experiences with your doctors, but that does not mean that everybody does. Most people with lupus rely on treatment to help control their condition. A large number of studies have shown that those who do not adhere to treatment largely have more active disease and worse long-term outcomes.

    With regards to your claim about 'food grade hydrogen peroxide' - High-strength hydrogen peroxide has been falsely touted to treat AIDS, cancer, and other serious illnesses, but the FDA states that it has no approved medical uses. In fact, high-strength hydrogen peroxide may kill or cause serious harm if ingested, even if it is labeled "food-grade,". Drinking high-strength hydrogen peroxide can cause gastrointestinal irritation or ulcers. Taking it intravenously can inflame the blood vessels at the injection site, cause bubbles in blood vessels (gas embolisms), and prompt potentially life-threatening allergic reactions. It is not a 'cure' for lupus.

    If you continue to make dangerous treatment suggestions without sufficiently warning people of the risks, I am afraid that your access to this community will be restricted. Please follow our community guidelines if you wish to participate.

  • Food Grade 35% Hydrogen Peroxide must be diluted I clearly said this,

    you must go to a registered place to get the IV injection done, here is the science on it

    and this link states that 7000 papers over the last 25 years have been written about the proof of HP therapy including curing Lupus

    There was a Dr Charles Farr foodgrade-hydrogenperoxide....

    who pioneered the use of IV HP to help lots of people and documented the use throughout the last 100 years in proving HP cures people foodgrade-hydrogenperoxide....

    he has proven it is completely safe, oral HP can be taken with a starting dose of 3 drops in distilled water 3 times a day make sure you do not consume food within 2 hours either side of taking it.

    and here is a Dr Ali andf his testimony that he has given 3000 IV injections in his clinic

    your body may go through a healing reaction due to the toxins being excreted through the liver and if you increase your fibre intake this will aid the healing process as well as taking Silymarin as this neutralizes toxins in the liver as well as regenerating the liver.

    The FDA are there to just protect the pharmaceutical companies they have never tested the safety of fluoride and yet put it directly into the water so how can they make statements that HP is dangerous when it is what your body uses to kill everything

    also they took a Dr Sebi to court

    as he was curing lots of different people including Lupus sufferers he proved to a judge he could cure them and the judge had a go at the FDA because they did not test anything they were just making lies up about people who were actually curing people.

    Hydrogen peroxide is naturally used in your body for the defense of the body it is your bodies main weapon in fighting disease it is produced in every cell in your body both fluoride

    and chlorine

    inhibit it. chlorine gas is given off when you have a shower you ingest a percentage of it which damages our airways.

    Obviously if the government say they are doing things that are to protect us but then the complete opposite is the truth then we need to take responsibility for ourselves.

    Yes you have to dilute the HP it has to be 35% and not lesser strengths due to the reagents the chemical companies add to it.

    Vitamin C creates HP in the body as well as Catalase, Catalase is used to neutralize the reaction between HP and the pathogen.

    I appreciate you are trying to protect people Paul but if you educate yourself in these matters then you are genuinely going to be able to help people and you will be able to give me a little bit of faith in charities that actually are there to cure people,

    There is a huge amount of disinformation on Hydrogen Peroxide but if your body creates it then how can it be toxic to our bodies as long as it is diluted and administered in the correct way?

    I can give you more info but Dr Sebis proof that he has cured people and Dr Farrs proof is worth testing on a small group of people or just showing people where to read up about the information

  • There is no clinically controlled evidence that hydrogen peroxide taken internally has any medical value in the treatment of lupus.

    It is a corrosive chemical and potentially dangerous if taken internally.

    Due to the complicated nature of lupus, it is inappropriate for anyone to recommend this to patients without their doctor's approval.

  • so why does your charity not undertake some clinical trials???? you get given money now you know where to look for a cure but you are using ignorance to avoid helping people.

    35% food grade H2O2 is your what your body uses as the basic starting point of our immune system

    what part of this do you not understand

    why are you telling people it is corrosive your body produces catalase and H2O2 in each and every cell catalase neutralizes the reaction between h2o2 and the pathogen.

    as long as you do not eat any food 2 hours each side of taking diluted 35% your body has no problems with this

    if people want to investigate this matter themselves what has it got to do with any doctor they are not there to help you only to keep you as a customer else they would be telling people about fluoride and its effects on the enzyme system as well as the protein system.

  • We are a small charity (7 staff in total) and do not run our own trials. We provide grants to researchers with our funds. We receive advice about which studies to give grants to from a volunteer Peer Review Panel of leading lupus experts in the UK and the decision is ultimately made by the Trustees of our charity.

    35% food grade hydrogen peroxide is corrosive, regardless of whether cells in the body also produce hydrogen peroxide. The body also produces ammonia when proteins are broken down by bacteria in the intestine, but it is still caustic and hazardous in its concentrated form and I would advise people to be cautious.

    People are free to investigate this, but without medical training they are unlikely to understand the full implications and potential effects it can have on the body. Despite your personal beliefs, Doctors apply medical knowledge and skills to the diagnosis, prevention and management of disease and are there to help people.

  • Without medical help I would be dead now.Just saying I have had a lot of surgeries..And tramadol helps me be able to get out of bed and walk.It might not be for everyone.My ulcers of a part of my phases of lupus I get them every single time.They always bleed and are not contributed medications. If they were I would have had them for years as I also have degenerative lumbar disc diseases due to have scoliosis and osteoarthritis..I am not going to not use the resources that we have come so far to receive.Its a nice thought but my ulcers are due to a H bacteria from my lupus and needs treated with an antibiotic .I will be getting that as soon as my test results come back.I know I sound nonchalant about bleeding ulcers. but I have had these many times with every flare up since I was 17 yrs old.So I already know the reason the ending treatment and the causes.

  • Yes I'm not allowed to have cayenne pepper or any pepper.I'm on a very strict diet from my doctor.

  • Its gluten and soy free protein drink

  • I believe in medical benefits without them I would not be here today I would have died at age 14.I think everyone has the right to believe what they will and I thank everyone for their advice but I rely on my doctors they are trying their best.And without my medications I would be bed ridden with a 11 month old baby.I need tramadol and valium to keep me from have seizures and to keep my pain at bay.But I understand that everyone has not had the same doctors and experiences that i have.And I thank you for your advice I know its coming from the heart and I thank you for that.

  • Ok this is my POST I WROTE NO ARGUING.There is no darn cure period......I didn't eat any food or anything at all for weeks and my symptoms stayed the same .So while I believe a healthy diet is good for anyone I do not believe it contributes to this disease or my whole family of 6 would have it as well.

  • I'm very sorry that I had to challenge these comments on your post Julietsmombless2015. It has completely gone off topic from your original post and I apologise.

  • I just saw this gosh this post got heated.I know everyone has their very own beliefs..When I felt better 1 time I went into remission ,thought that avocado was a cure for whatever was wrong with me..LOL  I know it sounds silly but I did not know I had lupus and I didn't eat food only protein shakes for months.I started eating avocados for breakfast and I felt better.In reality I went into remission.But I had it in my head that this was a cure for whatever was wrong but I think it was the vacation i was on in california relaxing with good friends in a stres free envirement that made me go into remission.That and the combination of a super healthy diet.I know you are both trying to help no need to apoligize for yourself or anyone else.

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